About Me

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly,
mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.”
-- Baruch Spinoza

Saturday, August 11, 2007

Our Walkabouts

This painting is of an Aboriginal Walkabout in Australia otherwise known as a "Songline."

Adam went to the doctor today -- calm and saying "ear, ear," leading the doctor's hand to the ears that seem to still bother him. We went there for a visit before our trip to Alaska as he contracted "swimmer's ear" with a blazing fever. The round of antibiotics had little effect -- his ears still bother him.

Usually, Adam has been terrified of getting his ears checked. Just approaching the doctor's office has usually sent Adam into tears. Yet, since being integrated into his quiet school and since being integrated at a camp, he is becoming more social, more aware -- being VERY aware of how others act around him. Obviously, he's an observational learner.

He's not the social butterfly of the group, but has what it takes to earn the nickname "Romeo" at camp as the girls have been fighting for his kisses, hugs and attention. Adam doesn't seem to mind. No, he's been beaming, in fact. Where close proximity and a swarm of people around him kissing him would have made him once meltdown, he is smiling and giggling away. He hung around the boys who came to visit us from Israel the other day, even though he can't find the words, "play with me." But "play with me," he is saying -- as clear as day.

Right, I was talking about his ears. I remember swimmer's ear. Adam comes by it honestly. He is the son of two former competitive swimmers and has come to love the water, advancing four levels at camp swim lessons. Shown once, maybe twice, he then launches on his own, dunking and jumping underwater and trying the "starfish" on his back. Adam wants to conquer the pool. I say this as I remember the days of pushing and prodding him as "expert" ABA therapists told me that he has to "learn how to learn" and that we had to reinforce everything because an autistic person had no intrinsic motivation. We never had to externally reinforce Adam, even though the therapists insisted that he had to be. No, it was when we said goodbye to ABA that Adam began to find his way, and I followed his lead and found the support he needed with Occupational Therapists, shadows and Speech Language Therapists. Adam had to be shown. He also needs to feel, experience -- experience through all the senses so that he can feel and learn, because learning has to have some meaning. Too often, if a child is presumed to be inattentive, they are denied the experiences. Lessons are confined to a table. For a child whose senses are alive, table-learning is non experiential. Table learning is usually based on an ability to perform and respond -- it has little to do with learning. It leaves big gaps in fact, as one needs meaning in order to become literate.

Yes, all that dunking in the water has its price, though. All that fun. I remember my own many swimmer's ear infections, and I hate to say that Adam needs the pus manually extracted. No more swimming for him -- at least not for a while and not without plugs.

So we play in our yard, we've had very little "therapy" but lots of activity. I once said, as the Canadian ABA'ers faulted me for doing so, that " a child has to be happy in order to learn." I remember educators saying that "learning isn't always fun." It sounded reasonable because learning was often made miserable for me. I was not good at math and was never given the time or belief that I would ever be good at it. For sure, the message was that I would always bad at it, the expectation was low, and it has stayed with me forever. There is absolutely no way that Adam could have learned as much as he has by following a pedantic ABA program -- one that would still have him reciting the names of animals because he can not necessarily "respond" in a typical way. It is true that learning is not always easy, but learning should never be married with the low expectation that is typically associated with autistic intelligence and "performance."

Adam blossoms and I look forward to the liberty of a non-ABA school -- a school that simply accepts Adam and happens to be the right setting for him at the moment. He is picking up math books, wants to write better (he has difficulty with his fine motor control), and he wants to gain those literacy skills as he enjoys lessons with mommy on categories and then go on jaunts to the grocery store to learn about "food." Or when we read and write stories about different kinds of "animals," after grandpa has taken dozens of photos from their trip to the zoo.

At the same time, Adam explores his yard, moving systematically from one bush to another, saying something to each, rustling our long ornamental grasses with his hands, getting his face really close. He walks to the pool and says something to it as well. He moves towards his image reflected in our glass door and takes steps backwards as if he's measuring the space.

"...repetitive, obsessive movement and interests," I remember being told. "They are dysfuntional. We have to make it functional." Again the famous last words of our ABA supervisors.

And yet, functional the behaviour is. Like a poetic mapping of his environment and a greeting of his familiar spaces. It reminds me of Dawn Prince Hughes' greeting of all the familiar trees and rooms in her house.

"I would silently acknowledge landmarks as the route unwound, whether they were the buildings or the hills or the flowers and trees. I had memorized everything. To me, each flower, tree, building and hill was a person, a being with its own personality and sense of agency. It I did not see it, it missed me and felt abandoned." (p. 19 of Songs of the Gorilla Nation).

Knowing her prose and meeting Dawn this year, I expect Adam is similar as we returned from Alaska and Adam greeting all our backyard plants. You call it odd? I call it an aesthetic: an ability to have one's surroundings pulsate with life within you so that you care for its very existence; an ability to know what it is to LIVE in our house, our neighbourhood. As I listened to This American Life on Mapping (Click here for This American Life), Adam's "repetitive movements" in his backyard are like a cartographical poetry. The interview asks rather pragmatically, "What do the patterns of leaf light tell you?" He asks as if the act is a meaningless waste of time. I would say that this kind of mapping is to know, to intimately know. To even know and understand the relationship of things in the environment to each other. What does it mean, in other words, to live?

Is that dysfuntional?

Is the Walbiri tribe in Australia? They "sing" there world into existence -- every stone and every tree. Or consider the Dream-tracking of the honey-ant, one of the totems of the Popanji:

"It was the Eternal Home, he explained, of the Honey-ant Ancestor at Tatata. And suddenly it was as though we could set the row on row of honey-ants, their bodies striped and gleaming, bursting with nectar in their cells beneath the roots of the mulga tree. We saw the ring of flame-red earth around the entrance to their nest, and the routes of their migration as they spread to other places.

'And these tracks run every place?' the man asked. 'All over Australia?'

'Yes,' said Mrs. Lacey, sighing with satisfaction at having found a catchy phrase. 'The song and the land are one.'" (from Bruce Chatwin's, The Songlines, pp. 27-28)

Adam sings as he meanders through are yard on these hot summer days. He mumbles words to them like a mutual secret. He does this several times until he moves on to something else, butterflies fluttering above his head.

Perhaps the "pragmatists" of our world need some lessons in the behaviours of various cultures. Pragmatism kills art. It kills creativity and perhaps even the lifeblood of "different" kinds of people or species. It lives for some ubiquitous "functionality," and even characterizes "autism acceptance" as a kind of "denial" of any intrinsic difficulty or disability. One must measure, however, how much of the difficulty or the disability arises from a majority that does not see the Dreaming-tracks, or the poetry of the environment -- that otherwise rushes from one task to another ever so "pragmatically" so to never, or rarely, see or feel or value little, if anything, at all.

I have been googling around. I found Dynavox but it's been so expensive (the government buys a few that Bloorview Kids Rehab rents out to people). There are quite a few options if you google "Assistive Communication Devices." There will be a service rep in your area if you are interested in trying one out first.

I got this idea sort of indirectly from Amanda B., (she mentioned it in a comment somewhere), but you might want to try online auctions for communication devices. It is definitely somewhat hit-or-miss, but sometimes people sell used (but working) devices for far below what they cost new. You can also get regular laptops that way for relatively cheap.

Hello, Estee, thank you for this wonderful point, that speaks so beautifully of education as more permeable and facile than is often imagined---and though perhaps less pragmatic, makes for more engaging, meaningful progress...

I'd like to pass on to you the "Thoughtful Blogger Award."Please find it here at http://neroli108.blogspot.com/2007/08/dear-reader-as-you-might-have-guessed.html

"If you allege that groups are inferior, and then you develop opportunities for them consistent with that inferiority, then of course they behave in ways you predict so you have a sort of scientific self-fulfilling prophecy." --Jones.

and then, proceed to blog and post the follow up responses knocking ABA. If your ABA school/therapists were selling ABA as some package and labeling things as pathological, then they were simply poor practitioners. ABA is misunderstood. It is simply using the tools of science to affect positive changes. Adherence to discrete trial training and other evidence based practices without consideration of the individual is nothing more than being a clinician where a scientist is needed. Blanket statements about ABA, though, allow for the same type of self fulfilling prophecies and prejudices that plague the autism communities. Fairness and open mindedness should not be reserved only for the autism community.

Let me see, Brigit Taylor, The Newhaven School, Jim Partington -- spoke to and even flew up other revered US therapists under the ABA movement. I believe the ABA movement espouses the words and methods of these individuals.

No, I didn't have a group of "bad ABA practitioners." I had what the ABA world considers to be the best.

ABA is not necessarily "evidence based." It has simply collected a lot of subjective data, unlike other effective teaching methods.

I really do feel that ABA, however, has adopted many teaching methods from outside of the real ABA genre. There are some good teachers too. But then this leads to the fact that there are many different methods that we must use to teach an individual. ABA, which really slows down the learning process for many children because it measures "typical response," and not true understanding outside of the expected response, can also be dangerous. But it is most dangerous in my view because most ABA therapists come in with the view that "stereotypy is the enemy" and that an autistic person's mind is inadequate or incomplete, thus -- has to be somehow moulded by that therapist. Further, behaviour is considered "not normal."

Certainly, there are ways to adopt a postive view towards autistic behaviour and existence with the ability to teach while respecting the individual.

Non acceptance of the individual and their innate learning ability despite the level of disability which yes, has to be assisted, is prejudice.

I am fighting for services beyond stigma. I am fighting for my son's rights here in Canada to have a choice in the type of education he receives -- not to be funneled into an ABA system that is so far, non scientific and inadequate for him and many autistic people like him.

If a family wants to do ABA, then let them. I do not endorse it as a therapy for all autistic people and I do not agree with the view all people have that autistic or disabled people are unaware and incapable, no matter how "profound" others believe them to be.

I also think that a lot of caregivers need therapy support. They need to be educated more on disability.

So, I find it puzzling that you are mixing apples and oranges. ABA views autistic being as inferior. That is the point.

I also wish to say, however, that I believe a bridge can be built. I do find it odd that if one speaks out about ABA in Canada, one is painted as being against assistance and services. If you read my blog, this is an incorrect assumption.

I think autistics deserve better (to take the words of Michelle Dawson). Our kids deserve to be viewed as whole people, and we have to understand autism better in the way of how autistics learn and process information. Thanks to Michelle and Laurent Mottron, this is being investigated. I think what people tend to do is wait for something that is clear and operationalized with a clear price tag. ABA provides that -- albeit it's very expensive. Not everything can be operationalized so easily. Not every kid fits into the same box.

When I see that Adam learns in a more natural way, and that most autistic kids do, in addition to support that is less "discrete trial" and well, just teaching, (yes, I tend to steer clear of terms) in a way that suits that child, then I think support needs to be requested and these autistic kids should not be denied. You see, what is very frightening is that it becomes a black and white choice -- do this ABA therapy or you get nothing at all. But Adam still requires support. Since we've stopped doing ABA specifically, he is progressing at an even faster rate. I was reluctant, for lack of better understanding, to let go of all typical support for Adam (everyone is trained in behaviourism). So, when I did, I was quite surprised to see how he did without it. We still break tasks down, but we're also much more creative. We take Adam's lead. We do a lot more on the computer and than transfer it into other settings -- so he does understand what the "lesson" is all about.

Therapists, when they come into the home do have a bias towards autistic people. Very few believe that autistics are competent and CAN learn. Most think they have to "fix" the child.

I'd bet we'd find a lot of overlap. The difference is in the way we view our children. Do we view them as whole people, (I really hate that term "whole people" so I use it for lack of a better word) with the need to have special learning supports? Do you believe that your child has a right to go to College if they want to -- will you advocate for the shadow or adaptations that they will require in order to achieve that goal? The question might be, do we believe at all?

You see, I believe that anything is possible, if we begin to reframe our expectations and understand the adaptations that can be made. And this is nothing to mourn about.

My other complaint is the assumption that for some reason Autistic children didn't have feelings nor emotions.

That my happy child that loved attention and praised HAD to be TRAINED to respond to THINGS. That he couldn't be bored with constant repetition. That he couldn't enjoy socialization. That he didn't have emotions or feelings. That he had to follow an exact set of learning criteria in an exact order.

When it was "ok", "we don't have a program for that" when they were told he couldn't transfer those skills after a year of therapy at THEIR psychometric assessment. That he could not learn in a regular classroom.

My son did AMAZING in Kindergarten this year. AMAZING. Tossed ABA and he's thrived. He had the best teacher and EA.

Why?? B/c he's learning with acceptance and praise. Learning at his speed and his interests. And he now understands basic Math, has regular communication (ok 1 to 3 words but it's regular), is social once more, behaviour decreased back to non-existant once more, reads better than his peers and his comprehension is growing quickly and daily.

They aren't robots just b/c they don't communicate the same as you or I. The are CHILDREN. And, you need to learn from them and lead them along, not demand they learn from you.

Also, the ABA therapist have only Early childhood Education at best here. Daycare teachers with a few courses in PEC's and ABA theory. They are not Autism specialists. They are ABA specialists.